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Deep Dive: Brain Death
An Introduction to Brain Death
An Introduction to Brain Death
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Video Transcription
Hi, my name is Ariane Lewis. I'm the Director of Neurocritical Care at NYU Langone Medical Center, and I'm excited to kick our session off today with an introduction to brain death. My disclosures are shown here. I was involved in the creation of the new guidelines, which will be discussed in today's session. I was also an author on the World Brain Death Project and an international advisor to the Canadian Critical Care Society Definition and Determination of Death Committee. I co-created the Neurocritical Care Society Brain Death Determination Course and was an observer on the Determination of Death Act Study Committee and Drafting Committee. During this session today, we're going to examine the history of brain death in the U.S. and internationally, assess public knowledge and religious perspectives on brain death, examine family objections to brain death determination, assess legal considerations related to brain death determination, and identify opportunities for improvement to promote trust in the integrity of brain death determination. To begin, it's important to ensure that everybody's on the same page with respect to what we mean when we say brain death. This definition was taken from the World Brain Death Project, which I'll be speaking about subsequently. It notes that brain death, also known as death by neurologic criteria, is defined as the complete and permanent loss of brain function, as defined by an unresponsive coma with loss of capacity for consciousness, brainstem reflexes, and the ability to breathe independently. This may result from permanent cessation of oxygenated circulation to the brain and or after devastating brain injury. Specifically, persistence of cellular-level neuronal and neuroendocrine activity does not preclude brain death determination. Brain death or death by neurologic criteria is also synonymous with other terms like brain arrest, brain circulatory arrest, cerebral arrest, and cerebral death. We'll begin by talking about the history of brain death. Although the idea of brain death is generally considered to have originated in the mid-1900s, this paper came out last year indicating that, from a philosopher's perspective, the idea of brain death may have actually been introduced as early as the mid-1800s. As I said, however, we traditionally think about the idea of brain death as originating in the mid-1900s. Before 1968, death was defined as cessation of all vital functions, including respiration and heartbeat. Then in 1968, a committee met at Harvard to examine the definition of brain death. This was a multidisciplinary committee that included representation from neurology, neurosurgery, physiology, law, public health, biochemistry, history, transplant nephrology, social ethics, and anesthesiology. There were two reasons why a definition for brain death was needed. First, because there had been significant improvements made in resuscitative and supportive measures, such as the ventilator and CPR, which allowed individuals who had such catastrophic brain injuries that they would be unable to breathe spontaneously but were now able to be maintained on a ventilator. It was felt that some of these individuals might have such catastrophic injury that they should meet criteria for death. And then secondarily, because the idea of brain death had begun to circulate, it was felt that it was necessary to solidify the description of brain death in order to determine who could potentially meet criteria for organ donation to be consistent with the dead donor rule. The general requirements for brain death include coma, absence of brainstem reflexes, and inability to breathe spontaneously. When thinking about the science of brain death, it's important to understand the Monroe Kelly doctrine, which is that space within the skull is finite. Inside of the skull, there is brain, there is blood, and there is cerebrospinal fluid. Intracranial pathology can cause the pressure within the skull to increase and cerebral perfusion pressure to decrease. And this can be due to a number of different types of pathology, including hemorrhagic or ischemic stroke, traumatic brain injury, global anoxic injury, brain tumors, infections of the brain, hepatic failure or acute hyponatremia, or obstructive hydrocephalus. As intracranial pressure increases, cerebral perfusion pressure approaches zero, which leads to brain circulatory arrest, causing death of the brain. There are a number of different conditions which mimic brain death, suggesting that an individual has coma, loss of brainstem reflexes, and is unable to breathe spontaneously, but in circumstances where this is actually not the case. For example, in locked-in syndrome, patients have severe pathology of the pons and in the most extreme circumstances are only able to look up and down, but are conscious and are therefore not appropriately considered candidates for brain death determination. Other conditions such as drug intoxication, Guillain-Barre syndrome, brainstem encephalitis, organophosphate poisoning, high spinal cord injury, leptomeningeal carcinomatosis, snake bites, and botulism can also mimic brain death. As mentioned previously, the brain death etiologies that are appropriate to consider when with respect to permanent catastrophic injury to the brain as a whole are subarachnoid hemorrhage, intraparenchymal hemorrhage, ischemic stroke, TBI, hypoxic brain injury, end-stage liver disease, and any lesions leading to elevated intracranial pressure. Some of these etiologies are shown in these images here. Between the 1970s and 1990s, after the creation of the Harvard criteria, a number of concerns were raised about brain death determination. First, there was confusion about the prerequisites for testing. Second, it was unclear what clinical observations were compatible with brain death. Third, there was no clear description of apnea testing procedures provided by the Harvard committee. And finally, the Harvard committee did not clearly delineate when confirmatory tests should be performed and what tests are acceptable. In 1987, new guidelines were created for brain death determination in children. These were subsequently updated in 2011 by the Child Neurology Society, Society for Critical Care Medicine, and the American Academy of Pediatrics. New guidelines were also created for adults by the American Academy of Neurology in 1995, then subsequently updated in 2010. Around the world, many countries created their own standards for brain death determination. As of 2020, contact with 136 countries found that 83 61% had national brain death protocols. As you can see in this chart here, all of the blue countries had protocols for brain death determination. In the gray countries, there was no protocol. With respect to the red and the yellow countries shown here, it's uncertain whether or not they had protocols as we were either unable to obtain contact with anyone there or we were unable to identify a contact to reach out to. However, across the world, there is variability and inconsistencies in the protocols for brain death determination. One aspect of this inconsistency was with respect to the concept of death by neurologic criteria. While the majority of the world, like the U.S., uses the concept of whole brain death, some countries use the concept of brain stem death. This has traditionally been described as the transatlantic divide as the U.S. uses the whole brain death standard and the U.K. uses the brain stem death standard. Review of international brain death policies demonstrated that there were eight countries that had brain death policies that suggested use of the concept of brain stem death. As I mentioned, the United Kingdom is the originator of this concept. However, a deeper dive into these policies found that actually all eight did not embrace the brain stem death criteria. In fact, three of these countries, including the U.K., only required assessment for loss of function of the brain stem. Three were ambiguous about whether loss of function of the higher brain is required to declare death. And in two, there actually was a requirement to assess for loss of function of the whole brain. So they did not utilize the brain stem death standard. When considering the difference between whole brain death and brain stem death, two questions arise. First, is a patient with primary brain stem pathology who meets criteria for brain stem death alive or dead? And second, does brain stem death due to primary brain stem pathology ultimately lead to whole brain death? A review that was published last year looked at all patients who'd been described in the literature as meeting criteria for brain stem death and found that for every 100 patients who were suspected of death by neurologic criteria, anywhere between two and 16 had primary infertentorial injury as the cause for the suspicion for death by neurologic criteria. Between one and four of these patients had isolated brain stem death at the moment of their first ancillary test, meaning they met clinical criteria for brain death, but ancillary testing suggested that there was either supertentorial blood flow or supertentorial electrographic activity. Many of these patients subsequently presented progress to whole brain death over the matter of hours to days. The international protocols also had inconsistencies in a number of other areas, including the prerequisites, the clinical evaluation for the brain death determination process, and the apnea testing process, as shown here. There were also inconsistencies around the world with respect to ancillary testing in terms of the indications to electively perform ancillary testing, the accepted ancillary tests, and the description of the performance and interpretation of ancillary tests. As you can see, there clearly was a wide variety of practices with respect to the determination of death by neurologic criteria around the world. So even though the basic core concepts of death by neurologic criteria, the requirement for coma, loss of brainstem reflexes, and inability to breathe spontaneously, were consistent, there were intricacies related to the determination process that were found to vary from country to country. As a result, international experts in brain death determination came together to create this consensus statement, the World Brain Death Project, which is the minimum clinical standards for brain death determination. This was meant to be a guide for any countries that did not have standards on the declaration of death by neurologic criteria to model off of when creating their standards, and an opportunity for other countries to review their standards and ensure that they were consistent with the minimum standards stipulated here. The World Brain Death Project addresses worldwide variance in brain death, the science of brain death, the concept of death by neurologic criteria, the minimum clinical criteria for determination of brain death beyond the minimum clinical criteria for brain death, pediatric and neonatal brain death, determination of brain death in patients on ECMO, determination of brain death after treatment with targeted temperature management, documentation of brain death, qualification for and education on determination of brain death, somatic support after brain death for organ donation and other special circumstances, religion in brain death, and brain death and the law. But the authors of the World Brain Death Project acknowledged that we don't have all the answers and included a number of research questions, some of which are shown here. The World Brain Death Project was endorsed by five world federations, including the World Federation of Neurology, the World Federation of Neurosurgical Societies, the World Federation of Intensive and Critical Care, the World Federation of Pediatric Intensive and Critical Care Societies, and the World Federation of Critical Care Nurses. In consideration of the World Brain Death Project versus the 2011 pediatric guidelines in the United States created by the American Academy of Pediatrics, Child Neurology Society, and Society of Critical Care Medicine, and the 2010 guidelines for brain death determination for adults created by the American Academy of Neurology, a number of differences were noted. These were generally subtle, but they did exist, and they addressed areas with respect to the prerequisites, the clinical evaluation, the number of exams and examiners, apnea testing, ancillary testing, and special circumstances, like treatment with targeted temperature management and ECMO. As a result, new guidelines were created by the American Academy of Neurology in conjunction with the Child Neurology Society, American Academy of Pediatrics, and Society of Critical Care Medicine, and these were published in 2023. This process was conducted via an evidence-informed modified Delphi consensus process that was newly created for these guidelines. The emphasis of the guidelines is on conservatism and avoidance of false positive determinations. The guidelines include 85 different recommendations that address general principles for the evaluation, prerequisites, components of the examination, apnea testing, ancillary testing, special considerations, and qualifications to perform the evaluation. Further details will be provided over the subsequent sessions today about these guidelines. Now I'd like to shift gears a little bit and talk about public knowledge about brain death. The public, unfortunately, is not very familiar with the concept of brain death. In fact, the general understanding and information that they have with respect to brain death often comes from mainstream media, television, and movies. In mainstream media, the description and depiction of death by neurologic criteria is quite confusing. This study from 2015 identified 208 articles on brain death on eight mainstream websites and found that 72% referred to a brain dead patient as being alive or on life support, only 4% included a definition of brain death, only 7% indicated that organ support is routinely discontinued after declaration of brain death, and only 5% indicated that physicians do not routinely need to receive permission from a family, a court of law, or hospital administration to remove a patient from organ support after brain death declaration. This study took a look at brain death depiction in movies and television. It was a review of 24 films and TV shows that featured brain death. None of the productions demonstrated a complete exam to assess for brain death. Six included an assessment for coma, nine included evaluation of at least one brainstem reflex, but none included an assessment of every brainstem reflex. Only two included an apnea test. Only 13% of these 24 films and TV shows were subjectively perceived by true neurologists to provide the public a complete and accurate understanding of brain death. Additionally, these types of headlines appear in the media and are very confusing for the general public with about the description of brain death. For example, miracle recovery of teen declared brain dead by four doctors, miracle any family could wish for, 18-year-old Lewis Roberts of England, pronounced dead, shows signs of life just hours before his organs were to be donated, and brain dead man wakes up after father threatened to shoot medics trying to turn off life support. These headlines, number one, suggest the potential that there could be recovery from brain death determination and that brain death, number two, is not the same thing as death by circulatory respiratory criteria. The origin of these headlines is not always clear to the public or to anyone doing a deep dive into the articles, as in some cases, it's possible that the authors of these titles incorrectly use the term brain death when what they really meant was a disorder of consciousness, a vegetative state, such as a minimally conscious state or vegetative state, or it is possible that in a more extreme and concerning circumstance, brain death was inappropriately declared by the clinicians involved in these cases. Additionally, there are articles like this, which can be seen in the general media, that address the concept of reversing brain death. This paper addresses a study that was going to be performed in India in 2017, in which scientists proposed the potential to reverse brain death using a variety of different techniques, including peptides and other unproven techniques. The study ultimately was canceled in India on account of the fact that there was no scientific foundation for this. It was planned to be relocated to South America, but again, was canceled, again, because there was no scientific foundation for this. But nonetheless, there were headlines around the world that addressed this issue, suggesting to the general public that it is possible to reverse brain death. Additionally, there are articles like the one shown here, in which the general public is given the impression that in some circumstances, physicians may declare brain death solely for the purpose of organ donation. In this article here, a doctor is accused of removing a boy's organs after falsifying death by neurologic criteria. Obviously, this is incredibly concerning and problematic. So to better understand the social perspectives on death by neurologic criteria, beyond what's portrayed in the media and on TV and in movies, it's important to think about religious views of death by neurologic criteria. The World Brain Death Project did a deep dive on religious perspectives on death by neurologic criteria, as shown in the table here. It was identified that there's no faith that uniformly opposes brain death. However, acceptance of the concept of death by neurologic criteria varies both between and within religions, as religions significantly predate the concept of death by neurologic criteria. Amongst Jewish rabbis, a survey found that 78 percent believed brain death is death, but there was a significant relationship between denomination, which included orthodox, conservative, and reformed rabbis, and the belief that a person who is brain dead can recover, the belief that a person who is brain dead is dead, and the belief that mechanical ventilation should be continued after brain death. Another study looked at the perspectives of Allied Muslim healthcare professionals on brain death and found that 84 percent believed brain death is death. Half of the respondents believed families should be able to choose whether an evaluation for brain death is performed, and half believed that families should be able to choose whether organ support is discontinued after brain death. Additionally, surveys of hospital chaplains found that they've experienced religious objections to brain death by members of a variety of different faiths. Here, you can see when chaplains were asked about the most recent religion of a family who objected to brain death determination that was located at their hospital, that responses varied. While there were many objections from members of the Christian faith, it's important to recognize that these results were not normalized based upon the number of families or patients who practiced any given faith in the settings where these chaplains worked. So with this in mind, we now move to talk about objections to brain death determination. Families sometimes object to brain death due to their religious beliefs, belief that recovery of neurologic function is possible, lack of acceptance that death can occur when the heart is beating, and lack of acceptance that spinal reflexes are not purposeful movements. How often do these objections happen? There's been surveys and studies over the course of the past decade which demonstrate and suggest that the frequency of objections are increasing. In 2015 in the U.S., 47% of surveyed U.S. adult neurologists indicated they had encountered an objection to determination of death by neurologic criteria or discontinuation of organ support after death by neurologic criteria. In 2016, 61% of surveyed U.S. pediatric neurologists and intensivists indicated they had encountered this situation. In 2020, 80% of surveyed U.S. pediatric neurologists and intensivists indicated they had encountered this situation. In Canada, in a similar study, half of Canadian clinicians indicated that they had encountered a family that objected to brain death in the past two years prior to the survey. There are also a number of highly publicized lawsuits related to objections to the use of death by neurologic criteria in North America, which brings us now to the topic of legal considerations related to brain death. Around the world, 70% of countries that were included in a 2015 survey indicated that they had a legal provision for brain death. However, there are areas of variability in the legal approach to brain death around the world. These include the qualifications to make a declaration of brain death, the number of practitioners required to declare brain death, the focus on irreversibility versus permanence, the anatomical region of focus in the description of brain death, and the medical standards for death determination by neurologic criteria. In the United Kingdom, there is no statutory definition of death. In the 1970s, the Conference of Medical Royal Colleges proposed use of neurologic criteria to declare death. In the 1980s, the Court of Appeals heard two cases in which individuals accused of causing death by neurologic criteria argued that death was actually due to discontinuation of support. In both of these cases, the Court of Appeals supported medical professionals as determination of death by neurologic criteria. Then in the 1990s, the concept of death by neurologic criteria was upheld in two cases, the most prominent of which was the case of Bland, in which the judge noted, in the eyes of the medical world and of the law, a person is not clinically dead so long as the brainstem retains its function. But it is now apparently possible, with the use of the ventilator, to sustain a beating heart even though the brainstem, and therefore in medical terms, the patient, is dead. This Bland case has been cited in multiple subsequent cases related to death by neurologic criteria in the United Kingdom. In the United States, the legal guidance on death by neurologic criteria is provided by the Uniform Determination of Death Act. The UDDA was written in 1981 by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. It serves as the foundation for the description legally of death by neurologic criteria and death by circulatory respiratory criteria in every state. The UDDA indicates that an individual who has sustained either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brainstem, is dead. A determination of death must be made in accordance with accepted medical standards. As mentioned previously, religious objections to death by neurologic criteria are sometimes made. Because of this, there are four states in the U.S. that provide legal accommodation to these objections. In California and in New York, the law notes that reasonable efforts are needed to be made to accommodate religious objections to death by neurologic criteria. In Illinois, the law similarly states it's necessary to take into account the patient's religious beliefs concerning time of death. Now, these recommendations are legal guidance with respect to how to manage these objections, but they're a little bit vague. The state that provides concrete guidance about how to handle these objections is New Jersey, where the law says that if a declaration of death by neurological criteria would violate the personal religious beliefs of the patient, death shall be declared and the time of death fixed solely upon the basis of cardiorespiratory criteria. There are multiple problems with the UDDA. As you can see here, a number of papers have been published over the course of the past decade indicating concerns with the UDDA. A few of these problems are described here. First, it is not clear what is meant by the phrase, all functions of the entire brain. Second, the accepted medical standards are not delineated in the Uniform Determination of Death Act. Third, the UDDA does not address whether consent should be required to perform an evaluation for brain death. Finally, the UDDA does not address management of religious objections to death by neurologic criteria. With these concerns in mind, the Uniform Law Commission was approached to address consideration of revision of the UDDA. This occurred first in early 2020, and by August 2020, a study committee was appointed by the Uniform Law Commission to study whether or not revisions to the UDDA were needed. Over the course of a year from 2020 through 2021, the study committee considered the history of the UDDA and of death by neurologic criteria, heard presentations from family members, heard presentations from organ donation representatives, and heard presentations related to the World Brain Death Project, then held extensive discussions. Finally, in July 2021, the Uniform Law Commission's study committee determined that it was appropriate to move forwards with the formation of a drafting committee to make revisions to the UDDA. The drafting committee was formed, which included a chair from the Arizona Court of Appeals, a reporter from the Duke University School of Law, 13 commissioners from states around the U.S., all of whom had legal expertise, and over 100 observers with relevant interest or knowledge who represented diverse backgrounds and perspectives. The observers included representatives from medical organizations, organ procurement organizations, and advocacy organizations. I served as the representative from the American Academy of Neurology. The drafting committee was asked to address potential revisions to the UDDA with respect to the medical criteria to determine death, the use of the term irreversible versus permanent, the specification of the brain region that needed to be damaged to declare death by neurologic criteria, and other issues such as religious or other accommodations, notice, notification, or consent, qualifications to perform a declaration of death by neurologic criteria, and the number of physicians required to declare a death by neurologic criteria. The drafting committee was given numerous instructions, most important of which was the need to focus on avoiding conflict and litigation. There were a number of challenges for this committee. First, committee member knowledge and background about death by neurologic criteria was far less than that of observers who had relevant background and expertise in this area. Second, there was a diversity of perspectives amongst the observers. There was variability in institutional standards and practice related to the declaration of death by neurologic criteria. Factors that made it challenging to move forwards were inertia, the political climate, the profound significance of this issue, and general fear of objections and resistance to change. From early 2023 through July 2023, the Uniform Law Commission received comments from 41 medical organ procurement and advocacy organizations about revisions to the UDDA. 83% of these 41 organizations recommended revising some aspect of the UDDA. The predominant themes were that the revised UDDA should include the term irreversible, the revised UDDA should not stipulate specific medical guidelines for the declaration of death by neurologic criteria, the revised UDDA should not require notification before the declaration of death by neurologic criteria, but rather this should be incorporated into routine clinical practice, and the revised UDDA should not require time to gather before discontinuation of organ support after brain death determination, but again, that this should be included in routine clinical practice. Medical and organ procurement organizations generally advocated that the UDDA should take a functional approach to death by neurologic criteria, meaning that the focus should be on the functions that needed to be lost from the brain in order to declare death by neurologic criteria, inclusive of the need for there to be coma, loss of brainstem reflexes, and inability to breathe spontaneously, such that the law was aligned with medical practice, rather than using the vague term of all functions of the entire brain. Medical and organ procurement organizations also generally advocated that the UDDA should not require consent for brain death evaluation and should not require opt-out accommodation of brain death objections. Medical organizations with religious affiliations or a focus on advocacy and advocacy organizations advocated that the revised UDDA should either take an anatomic approach to death by neurologic criteria, continuing to focus on the loss of all functions of the entire brain, or should consider eliminating death by neurologic criteria altogether. These organizations also favored that the UDDA should require consent for brain death evaluation and should require opt-out accommodation of brain death objections. It's clear that there were a wide variety of perspectives about how to handle UDDA revisions. As a result, in September 2023, the committee chair sent an email communication to members of the committee noting that the revision process was being put on pause, as it was felt that the widely enactable revision would not be feasible. So now I'd like to shift gears a little bit with this background and talk about some of the key opportunities to promote trust in brain death determination. It's obvious that the law is not going to be changed at this point in time, but there are still many opportunities for us as clinicians to improve the brain death determination process to ensure that the general public supports and accepts and understands the concept of death by neurologic criteria. The first thing that's most important is for us to promote knowledge related to death by neurologic criteria. So how knowledgeable are medical students about brain death? Serial international studies show that medical students frequently do not understand that there's no treatment for brain death and that brain death is legal death. This study looked at 122 medical students and asked where they had heard about brain death. 88% had heard about brain death on the internet and 75% had heard about brain death on television news reports, but only 74% had heard about brain death in their neurology clerkship. It was clear that there's a need for more education related to brain death for medical students. Unfortunately, neither critical care trainees nor faculty are as knowledgeable as we would like them to be about brain death. This study from 2014 found that critical care trainees scored only 25% on tests about brain death and attending intensivists scored only 32.5% on that same test. This study by Jamie Labuzetta found that health care personnel are unclear about the gold standard for determination of brain death. When they were surveyed about what were their main questions regarding brain death determination, nurses, advanced practice providers, attendings, residents, and medical students included the question, what is the gold standard for brain death determination in their top three questions about brain death determination? Additionally, this study demonstrates that there are concerns by clinicians who are completing brain death evaluations about both their training and competency to do so. 68 physicians who perform brain death evaluations were surveyed about their training experience. 24% of them indicated they had no relevant training. Only 85% of them indicated they felt competent to perform brain death evaluations. In another study, organ procurement organizations were asked about their experience with clinician competency and training experience related to brain death evaluation. Of 12 OPOs, 75% felt that clinicians were not as knowledgeable about brain death as they should be. 83% reported they had seen declarations of brain death reversed. 50% indicated they had rejected a potential donor due to concerns they did not meet AAN or hospital policy requirements for brain death. Additionally, this study looked at neurointensivist perspectives on cases that were referred to an organ procurement organization after the declaration of brain death and found that the neurointensivist, who was a medical advisor to the organ procurement organization, had concerns about practice deviations for 19% of the declarations. These concerns related to the prerequisites, the examination components not being tested or documented, and failure to meet the apnea testing target. Thus, it's clear that there are many opportunities for improvement in clinician training and competency in the brain death evaluation. Two examples of ways to facilitate this are shown here. First, with the newly published guidelines, which will be discussed in the subsequent sections today, the American Academy of Neurology posted online a training tool that would allow practitioners to walk through the brain death evaluation. I encourage you to take a look at this. Second, the Neurocritical Care Society has posted a brain death determination course online, which is updated to be consistent with the new guidelines to provide information and credentialing about brain death determination. The brain death determination course created by the Neurocritical Care Society was first launched in 2019. In the first year of the course, there were 342 participants, 89% of whom were from North America. 96% of these participants reported the information in the course improved their skill level, 86% reported they would incorporate changes in their practice based on the knowledge acquired, and 81% reported the course provided new ideas or information they expected to use. Additionally, didactics and simulation have the potential to expand knowledge and comfort with brain death determination. This study was conducted in NYU with medical students, and here we found that after performing a didactic and simulation with medical students, there was significant improvement in their understanding about brain death determination and their comfort with the brain death determination process. Thus, there are a number of means to be able to improve knowledge related to brain death determination. Another opportunity to improve the brain death determination process is in the area of consistency. This information shown here, taken from the World Brain Death Project, illustrates that there are a number of studies where there is evident inconsistencies in brain death documentation. Additionally, these two studies of hospital policies around the United States in both pediatric settings and adult settings demonstrated that there were inconsistencies between hospital policies related to brain death determination and medical society guidelines. These inconsistencies included the prerequisites, components for the neurologic examination, apnea testing procedures, and targets, and ancillary testing. One example of ways to improve consistency in the brain death evaluation is through education. Another possibility is through regulatory oversight. In 2016, the American Academy of Neurology hosted an interdisciplinary summit to address contemporary concerns about brain death determination, and a number of medical societies indicated that they advocated for regulatory oversight over hospital policies for brain death determination. Finally, an area of an opportunity for improvement related to brain death determination is with respect to communication. There are a number of barriers to communication about brain death. These include perceptual barriers, such as the fact that families often have no knowledge about brain death or have incorrect preconceived notions about brain death. Additionally, there can be discomfort with the topic for clinicians. Discussing end-of-life issues and giving bad news is challenging. Death by neurologic criteria is far less common than death by cardiopulmonary criteria, and few training programs address these skills. Finally, there can be emotional barriers related to communication about brain death, as brain death is sudden and shocking, so families may become overwhelmed and demonstrate selective perception. Clinicians who are talking about brain death must understand that it's important to demonstrate empathy and establish a good rapport. Deliver information clearly and accurately in a timely manner. Invite questions and confirm understanding, and be culturally sensitive. It is beneficial to allow families to observe the clinical evaluation and to review imaging with you, and to give them time to process this information before moving forwards with the brain death evaluation. It should never be considered a rush to complete a brain death evaluation. In conclusion, the World Brain Death Project aims to promote international consistency in the minimum standard for brain death determination. Clinicians involved in brain clinicians involved in brain death determination should be adequately trained and competent. Clinicians in the U.S. should review the 2023 AAN, AAP, CNS, and SCCM Pediatric and Adult Guideline for Brain Death Determination and update hospital policies to facilitate practice consistency and prevent false positive determinations. Finally, clinicians should be aware of the social, religious, and legal context for brain death determination. In 2001, Alex Capron, who was involved in the creation of the UDDA back in 1981, published this paper in the New England Journal of Medicine, noting that brain death is well settled, yet still unresolved. This statement remains true today. Last year, Jim Burnett and I published this book on areas of controversy and consensus related to brain death determination. It addresses conceptual issues, medical issues, scientific issues, legal issues, religious issues, and ethical and social issues related to the Declaration of Death by Neurologic Criteria. Thank you very much for your attention. I'm happy to take any questions over email. The group who is here today will also be able to field questions at the end of their sessions. Unfortunately, I was not able to be present for today's session. I hope you enjoy the rest of the sessions and learn about brain death here and take the teachings back to your own institutions as well. Thank you.
Video Summary
Dr. Ariane Lewis, Director of Neurocritical Care at NYU Langone Medical Center, provided a comprehensive overview of brain death in a recent session delving into the history, definitions, protocols, and legal considerations surrounding brain death determination. She emphasized the importance of understanding brain death as the complete and permanent loss of brain function and highlighted the variability in brain death protocols globally. Dr. Lewis discussed challenges such as lack of public knowledge, inconsistencies in clinical practices, and the need for improved clinician training and communication. She touched on the ongoing debates around brain death criteria, including the UDDA and the need for revisions to address legal and ethical concerns. Overall, the session underscored the critical need for standardized guidelines, enhanced education, and improved communication to ensure trust and accuracy in brain death determination processes.
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Ariane Lewis
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Dr. Ariane Lewis
Neurocritical Care
NYU Langone Medical Center
Brain death
Protocols
Legal considerations
UDDA
Standardized guidelines
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